Has anyone used low dose naltrexone?

[ellie6]

My doctor has prescribed low dose naltrexone for me to try for my back pain. I’m a little leary after everything I have read. Does anyone have any experience with it?

[Maz]

@ellie6 wrote:

My doctor has prescribed low dose naltrexone for me to try for my back pain. I’m a little leary after everything I have read. Does anyone have any experience with it?

Hi Ellie,

A few folks here have or are using LDN as an adjunct to their antibiotic therapy. There’s some info on the LDN ProBoards about candida and LDN you might be interested to read:

http://ldn.proboards.com/index.cgi?board=forum&action=display&thread=303

The following video presentation, by Dr. Burt Berkson is pretty interesting in light of the fact that the RA patient he describes is on LDN, but also is put on minocycline 100mg QD (later switched to the macrolide abx, clarithromycin) and IV ALA.

http://www.youtube.com/watch?v=nttilGKpJvU

I tried LDN a few years ago and stayed on it for about 8 months, gradually working up my dose from 2mg a day. I saw some improvement in symptoms, but ultimately had to stop due to night tremors. Upon talking with my new LLMD, it seems that this can occur as a side-effect for some Lyme patients. I haven’t ruled it out as a future option to re-try (probably at a lower dose than the 4.5mg I worked up to, which was clearly too much for me), but for now don’t seem to need anything else.

I think the folks that may be able to provide more expert lay insight on LDN would be found at the LDN ProBoards, or other similar LDN support sites, but hopefully others here will chime in and share their experiences. Some folks have really good results with it, but mostly folks here are using it in addition to their AP, as a supportive adjunct (as per video above).

[cavalier]

I’ve been on 4.5 mg’s for a year now – it helps but it isn’t enough by itself to put me into remission although it did lower my #’s which consistently were higher before that. It is a good immune modulator one to consider in the arsenal that has good history of usage. It has added some relief & this I do credit to putting my raynauds at bay completely so it did help reverse & slow some things – but I am also aware of my Scleroderma continuing as well but it has continued with AP & other adjuncts too but of I also feel strongly of course that I would be worse off without LDN as I have run out once over a weekend & by the time I got the LDN again it was late on Tues – I really noticed a nose dive for being even more tired & hurting and I get sick a lot less than I was pre LDN as well.

I did take 9.0 mg’s with no issues as well for a time but I then felt I no longer needed quite that much so why waste it? I still get it filled for two a day it was 4.5 at bedtime & then during the day – as the cost is the same.
And it’s nice if I ever feel I have the need to go back up – which I should consider when I am in a flare doing as I type this as it did seem to keep that from happening for me more or it just was a time when I didn’t get the flares who knows another trial would tell me that.

Point is EVERY one of us is different in how we handle med’s & the affects. For me I got a Lupus marker appear when I was on Mino & my feet went black after about 5 months on it. Where many other patients do just fine on mino – go figure.

I believe LDN helps in some cases for others it could do more others cant take it – some real herxing occurred for me & not all but some may feel true side affects & others maybe getting a herx & not realize it.
I do know I am worse without LDN as I have tried once on purpose to stop & once cause I ran out – I didn’t expect to feel any differences but I did.
I know of no serious side affects although some maybe uncomfortable.
I also have Lyme but I have SD & not RA or something else. Again where we each are at in our disease process & our body makes us each unique like snowflakes. 😀

Oh most folks titrate up slowly – I was in bad shape with my SD & already on AP so I took a jump to 4.5 right away – my doc also felt it was worth not waiting other than herxing which is good I tolerated it just fine I was awake more for the 1st couple of nites but I would go right back to sleep – but off & on but immed. go back – I was also aware of the circulation being increased to my feet which is why I woke up mostly but I felt better more well & that feeling felt good. I did have some dreams I remembered when I woke up – I felt I slept deeper better which I really needed as I was in pain & lacking sleep for some time.
Best – Jill SD Lyme CPn & Candida poss. Bartonella

[vera]

Hi Ellie,

I have been on LDN since 2009. Have experimented going off for a few days and got very sick, so I know it helps boost my immune system. Everyone is different, but this is my experience on LDN. I noticed an improvement in mood, pain and energy after the first dose. With AS, my symptoms are greatly improved. There is some disagreement whether a person on a biologic will receive any benefit from LDN, but as one who is on Enbrel, it definitely helps me. In fact, that’s one of the reasons I want to continue on LDN so that my immune system stays as strong as possible while on the biologic.

LDN is an extremely important part of my regime. Unfortunately, the LDN alone is not enough for me with PsA and AS. LDN along with the minocycline, dietary changes, supplements, some meds, have all worked together to give me back more mobility. I have been able to gradually reduce the Enbrel from every 7 days to every 9 days – and I hope to get off of it completely one day.

Best to you,
Lori

[ellie6]

Thanks for the replies. I’m wondering..it says no narcotic type of meds can be used while on LDN and if you nneded surgery/anesthesia there is a waiting period. What happens in the case of an emergency? What if you were unconscious say and unable to tell anyone you are on this med??

[lynnie_sydney]

Ellie – if you go to the LDN site, there is alot of information there
http://www.lowdosenaltrexone.org
Also, if you look at the list of compounding pharmacies, Skip’s Pharmacy is listed. You can email a question to the pharamacist (Skip) and he will respond.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[cavalier]

I have a SS dog ID tag with my medical info on it – contacts & medications I take including LDN & my blood type for this reason the info is engraved on both sides. It isn’t just for LDN that this is important for those precious minutes for blood type etc can matter. I also have listed on there I have Lyme & systemic Scleroderma. It cost me less than 8 bucks with the chain with a lifetime warranty from a maker who makes dog tags – they do a great job. I found them on-line if you do a search you will find them by plugging in medical ID dog tags.
BY the way you can take some pain meds with LDN but I feel this is best answered by a pharmacist for you.
Some will only render the LDN useless it just depends on which med & their interaction.
Skip will know!

Jill SD Lyme CPn Candida & Poss. Bart.

[cavalier]

This following article better explains why I take LDN, as I previously said my #’s for SD lowered after I started taking LDN & I was actually in remission according to my blood tests for a while & I felt better too during this time, but later my SD #’s changed to being back but still I feel there is definite help with immune modulation and slowing fibrosis important for me with SD. If all LDN does is these things which it does do for me – then it is well worthwhile. Other articles suggest this is also antifibrotic as is also reported, Niacin & Taurine.

http://www.elaine-moore.com/Articles/LowDoseNaltrexone/BenefitsofLowDoseNaltrexone/tabid/112/Default.aspx
LDN Dosage
LDN is generally used in doses ranging from 3-10 mg daily depending on body weight, the patient

[vera]

Cavalier,

Thank you for posting this most interesting and informative article. I researched LDN in 2009 when I started taking it, but learned much from this information that I didn’t know before. Thank you! 😀

Lori

[cavalier]

You are welcome Lori – I just felt LDN’s help is often not fully appreciated. While my immune system is horribly under attack with both Lyme & Scleroderma causing disarray – LDN has a role & a big part in being supportive.

Jill SD Lyme CPn Candida & poss. Bart.

[cavalier]

Am posting this for anyone who is already on LDN as part of their therapy or is considering it as something to think about-

My doc – Dr C. also suggested we switch my LDN from the local compounding place we have been using since last July – as he wonders if their source is as pure/potent as Skips in Fl. is just to be sure we are getting the max. from my LDN prescription – I had not thought of this but I think it’s worth seeing to see if this could make any difference. Skip a pharmacist with many yr’s of experience in making LDN says they are not all the same in how they are compounded & for potency. Now whether that is to get people to Skip or what but Dr C. says it seems to be genuine his stating this. So basically not all LDN maybe equally as effective.

Jill SD, Lyme CPn Candida & poss. bart.

[vera]

Jill,

Great question! I’ve been wondering the same thing about my LDN which I get from a local compounding pharmacy. They are good enough to fill it for me without lactose because of interstitial cystitis issues. I don’t know if Skip would do that for me, or whether he’d charge me extra. I suppose the thing to do is to switch to a pharmacy like Skip’s and do a test on ones’ self. 🙂

Best,

Lori

[cavalier]

Lori I told Dr C. I don’t use the Lactose filler myself. I’ve been using cellulose instead – I know he felt & I know from other forums that Skip has been on that is not a issue – he felt I could save some money rather than pay more.

Best – Jill

[vera]

Jill,

So let me see if I understand! Did Skip think you could save more money by using cellulose as a filler for the LDN? I pay $33 out of pocket (insurance doesn’t cover LDN for me). Would I be paying more if I bought thru Skip’s?

Thanks!

Lori

[cavalier]

No I am using cellulose now Lori with my compounding pharm.as a way to avoid lactose.

I have not gotten the info yet from Skips – I just saw Dr C. this past Friday so I will hear this week as to cost – I also pay for mine out of pocket!

Just typically most patients who use LDN say they get it for a lower cost from skip due to the volume he does than locally is what I was saying.

Best Jill

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